Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Wednesday, July 2, 2014

Trying to survive

Hello my precious.

These letters seem to be getting harder and harder to write....

People say time heals but it really doesn't. As time goes by it becomes harder and harder to know that you are no longer an earthly angel.

This is the last photo that I got to take of your beautiful face and gorgeous smile - even though you weren't feeling well - I do believe you were smiling at your angels because you weren't facing or looking at me - its as though you were in another world.

This photo captures every essence of your being.

I guess the hardest part is that we don't get to see new pictures of you. I go on to my phone and open up the folder and I still expect to see new photos, and then I realize I will never and this will be the most recent and last one I took.

It breaks my heart baby boy - Daddy and I feel like we are just trying to survive and not doing too well at it.


 
We don't really know how to cope, besides to slap a smile on our faces and pretend to everyone else that everything is ok - well at least that's the impression that everyone seems to get. But in fact we are dying inside and barely surviving.

I love you baby and miss you more than words can ever begin to explain.

I found this the other day and it is pretty much true:

"My Mom Is A Survivor
My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others...a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My mom tries to cope with death to keep my memory alive.

Author......unknown
 
Forever and for always you loving mum

 

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